Saturday, December 30, 2006

Another decrease - change in feeding

Wren lost another 70g in the past 24 hours so his feeding routine has changed. He is now allowed only 3 breastfeedings a day and has 5 NG tube feeds with 30 calorie supplement + breastmilk.

I went in to give him his noon tube feed and he was very upset that I wouldn't nurse him. He was rooting around and crying even when he started getting the milk in his tummy. It was very distressing and I ended up in tears. Finally, the (nicest) nurse suggested I nurse him for comfort after he'd had his 85CCs and both of us liked this. It settled him immediately and he had a snuggle instead of yelling.

People have also started asking me about my diet. The idea is that my breastmilk may not be calorie-rich enough. I suggested that my diet was just fine but confessed to skimping on my prenatal vitamins. Now every nurse I see seems to know I am not longer taking them and "reminds" me. I talked to our day-nurse who is a lactation specialist about the idea of pumping first then Wren getting the hind-milk. She thought this was an idea to try so I will do that at 6pm.

We are still talking about going home tomorrow IF HE GAINS weight. I am not feeling very confident after the weight slide of the past 3 days but you never know.

Friday, December 29, 2006

Discharge discussions continued

The charge nurse has been talking to us about discharge on Saturday. They say it depends on the echocardiogram coming back okay. The X-ray of his lungs was clear (yahoo!)

We have to learn to insert and test NG tube placement, administer tube feedings, administer medications, pack and clean his incision, recognize signs of respiratory/cardiac distress.

I am still feeling both hopeful and unprepared. The house is not set up and our first attempt to insert the NG tube may have been in the lungs. This freaks me out.

Anyway, he nursed 66g tonight (up from 50g this afternoon). Sorry this is so short I am starving. I am forgetting to eat and do basic things like clean my teeth. Tonight I am using my birthday present to give myself a hand spa. You don't want to know the details but it involves parafin wax and heat and watching TV.


So the same day that Wren is losing weight they are discussing sending us home on Saturday - with an NG tube, medications like Zantac and instructions on how to identify a respiratory emergency. Ho hum. I am both anxious and excited.

Wren had another chest X-ray this afternoon and we are waiting to hear how it looks. He will have to have another echo before discharge. Waiting on that too.

Another day down

Wren lost weight again today. He was down from 4.070 to 4.040ish (so about -30g). The nice nurse said he could still be losing fluid and so its not necessarily bad. I don't know.. but I feel discouraged.

Last night he received 3 GI tube feeds of 100g each and this morning he would only nurse 70g each time. Perhaps he wasn't as hungry now he is getting more overnight but I really hoped for a little gain.

He is also breathing a bit more noisily today, having minor retractions and tired of nursing soon none of which are good signs. Still, it was barely noticable to anyone else so I have asked the nurse to watch the quality of his breathing closely.

His vitals have been stable for so long that he is now off the monitors during the day.

Thursday, December 28, 2006


Wren seemed to lose weight again today although I have to wait for the morning weigh-in to confirm. Before the 6pm feed his BEFORE weight had dropped 170g from the last time I fed him at noon. I spoke to the nurse and suggested his supplemental feed (of 65g) was not enough. When I nursed him at 6pm he drank 122g of milk - a new record.

She called the doctor and received approval for an increase to 100g per feed. I hope that helps him out a bit.

Happy Birthday to me

Today is my 40th birthday. I spent the early morning with Wren at the hospital and just returned home for some eggs and salmon (and presents). Yum.

Wren had a bad night - lots of discomfit - probably from the 'mistake' at the hospital in which he was given formula instead of calorie enriched breastmilk. I came in this morning and found that no breastmilk had been used overnight so I looked in the room trash and found bottles of Alimentum. I was then told he was up every 10 minutes through the night. Ugh.

I have sorted this out with the medical team and apparently the nutritionists orders were not entered by the doctor so he was on formula as a default. Ugh. Ugh.

This morning he had lost weight instead of gaining. He has to gain daily for us to take him home. The good news is that this morning he nursed:

6am - 98g
9am - 90g

I hope he gains tomorrow - that can be my belated birthday present.

Wednesday, December 27, 2006

World of Warcraft

Josh has gone in to sleep the night in the room (aka play World of Warcraft all night.) He swears he lets his guy die if Wren wakes up but I am not entirely convinced of his immediate priorities.

Unlike ICU where there were always nurses on hand, Wren is in a room on his own some distance from the nursing station so it really breaks your heart leaving him there. He's so small and I doubt they would hear his little bleats when he loses his binky.

I am also entertaining disturbing fantasies in which someone steals Wren. When I come in at 5am I sneak along pretending I am a thieving villain and hope that someone sees me. So far, I have not been spotted on many occasions. I am hoping there is some high-tech covert surveillance system that would prevent me making off with Wren but so far I have only been asked for my little cardboard "parent ID" a couple of times.

Then again, who steals a baby from the surgery ward?

2 weeks old - his job is to gain weight

I slept at hospital between the 6am and 9am feeds and managed to wake up for rounds. The second surgeon came by and debraded his incision. He says it is not infected but has failed to close properly. He opened it up and we packed it with a kind of gauze strip to keep it moist. Apparently it needs to heal from within.

The goal for the next phase is for Wren to gain weight which can be hard with a heart issue and post surgery. A nutritionist came by with a plan - I am to nurse him 4 times a day with the goal of having him take 65g of milk. He gets a supplement of breastmilk in his tube if he tires before that.

So far today he ate:
6am - 38g
9am - 56g
12pm - 58g
3pm - 64g
6pm - 78g

So he is improving although it is a lot of work and fussing to get him to latch.

During the night (or when I am not there) he will get calorie fortified breastmilk through the tube. This is because babies with heart 'problems' tend to work harder with circulation using more calories than other babies. Wren breaths a bit faster than normal which takes more effort. Nursing also takes effort and he sleeps immediately afterwards for a long while. The idea is that the supplement and tube feeding is giving him extra gain with no effort.

I am not thrilled about it - I am really enjoying nursing him and think he is doing well - but he has to show weight gain to go home so if this is what it takes I will go along with it.

Once again the surgeon implied that the jury is still out on how Wren's left heart is going to cope with doing all the work. They said they will watch for signs of fatigue such as sweating, rapid breathing and such. They will also watch echo's at longer intervals to see whether his left ventricle becomes "less stiff" and how the valve does. However, for now weight gain is going to be a good sign.

Thanks again for all the support and well wishes.

Tuesday, December 26, 2006

Nursing treadmill - Christmas day

Since Wren started nursing this morning I have been running back and forward to the hospital. He is in his own room and with help from the lactation consultant he has finally managed to eat all he requires by nursing - once!

Before he nurses we weigh him on a special scale. Then I nurse him (with lots of complaining from him about how hard he has to suck and how he dislikes lying on his sore side) and after 30 minutes he gets weighed again.

He eats or is fed every 3 hours on the dot.

He must be fed 45 ml of milk.

If he doesn't eat 45 ml by nursing he gets it via his tube.

I know its best for him to nurse now.. he is very very sweet and interested in looking at us while he does... but, ye gods, I am even more exhausted than I was with rushing back and forward and settling him and having 1 hour at home before rushing off again.

Tonight I am planning to do the 9pm and 6am ones and try and sleep at home between those times.


Merry Christmas

I went down in the darkness to visit Wren and found him fast asleep and in a new ward. He is now in the general ICU (not cardiac). He is looking great.

I was there for rounds and this is the big news:
1) Wren is being transferred to "the floor". I gather this means he gets a bed in the general surgery ward as soon as one is available.

2) The surgeon looked at his incision and said it is probably opening because of infection and his skin is weakened by cortisone and the prostglandins. He feels it will heal from the inside with wet-dry dressing.

3) Wren's "work" is to eat. He has to get his calories by mouth before he can lose the tube. He gets fed 3 hourly and can nurse! I tried this morning and he complained mightily but managed to nurse for about 10 minutes on one side.

4) His last central line can come out.

All good news from us. I am very happy.

Monday, December 25, 2006

Incision update

Ugh, they said Christmas wouldn't affect things around the ICU but its not true. Doctors are scarce and our nurse has two babies - one of whom is a lot sicker than Wren and having desats all day so she's been less attentive to him than we would like.

The wound seepage/infection was noticed Saturday morning and the surgeons/attending have STILL not seen it.

I went in for a visit Sunday evening and just bypassed the nurse and went to find a doctor. The only one around was the resident/fellow (??) who I had never met before. I asked her to come and look at his wound. She unwrapped it and removed one puss-lined dressing. She says its not seriously infected because the surrounding tissue is not inflamed and red but that the wound is not healing properly and closing because of the seepage.

The surgeon needs to look at it to decide whether to pack and suture the wound or whether there were sutures in the underlying layer which should hold if they open and redress it.

It looks a bit nasty and I sure do want them to get a move on this. I will bug them again tomorrow and the doctor promised to follow up on it personally.

On the feeding by bottle thing. Wren ate 10CC first feeding, then 15CC, then 10CC then 17CC. He gets the balance of the 30CC by tube so his tummy gets filled up. He is also on zantac because they think he has reflux which is not suprising after not eating for all 10 days of his life.

Oh, my other complaint is the day-nurse, in her rush, used the most recent milk instead of the colostrum.

More good than bad

A lot of progress today. Wren is now able to eat from a bottle. He can't go straight to the source yet, apparently because it's much more work than sucking from a bottle and they don't want to strain him. Maybe in a day or so. That would be a nice Christmas present. Also, his cpap is out and his oxygen saturation is holding steady at 97, so it looks like he doesn't need it anymore. That leaves just the feeding tube going into his nose, which isn't even hooked up to anything. I expect they'll pull that out today and then it'll just be the one IV into him.

Unfortunately, we're not allowed to have a day of unmitigated good news. His incision has apparently gotten infected and is quite weepy. The doctors are going to look at it sometime today and presumably clean it out and restitch it. No word, but I'm guessing they're going to want to sedate him in some way, and that might mean oxygen and maybe no more feedings. We might be backtracking. Very frustrating.

Sunday, December 24, 2006

Dec 23rd pictures

Wren has been moved to a crib and has only one IV remaining. He is having some pain from stomach gas now he is being fed and his wound is slightly infected but these are smallish issues.

Dare I hope that things continue like this?

Day 4 post surgery - Mr Grunty

Wren did well overnight other than a spell of distressed crying due to pain. His incision is a bit raw and they are giving him tylenol regularly.

Meanwhile, he has far fewer monitoring lines (which freaks me out but makes him feel more comfortable). Monitors record BP at 30 minute intervals, heartrate, respiration and temperature underarm. All those results are good although he breaths faster when he's upset.

The work of the day is to EAT! Yes, he has graduated to breastmilk at 2CC / hr for 24 hours delivered via nose-tube. He had a few CC by mouth and got very upset that it stopped. He is clearly feeling tummy hungry and is quiet complainy and grunty for longish periods. The doctor said it is important in coarc babies to keep the introduction of food very slow. Under coarc conditions the bowel is not properly infused with blood and after the coarc is repaired the blood flow is good but the base capilliary size is small so if food is introduced too fast the bowel can constrict, shutting down and slowing motility. This can lead to sepsis through bacteria in the stomach contents. At least, that's what the doc said in some form.

I was there for his first colostrum syringe and he was quite and very very keen. Afterwards he was able to tell us he wanted more and was pissed off we didn't give it. The binky was not sufficient (the nurse said he was not fooled).

He is off diuretics (went -400CC overnight) and they are going to try and avoid morphine.

Feet feel warm. They were 35 degrees when they took off the foot temp probe. I would prefer it to be in place but they will take them at intervals and feel the feet regularly.

So, good signs for now. We had only ONE DOCTOR at our room on rounds (although a whole team were going about). This is a good sign :) Our nurse even hinted that if not for the weekend and holiday they may send us to step-down general surgery ward soon.

Frost came for a visit later on and sang songs. He said it was the "worst day of his life" when Wren started crying but he was smiling. He thinks Wren is very cute and small.